Ryan James Ammann , born on July 9th, 1995, to the parents of Chris and Katie Ammann. He was born premature and weighed 4lbs. 7.2oz and was one of two. Ryan survived his twin sister whose name was Savanah Lyn.
When Ryan was born, he had no body fat, no eyelashes, no eyebrows, and no fingernails. His skin was like rice paper and he had to be put in an incubator to allow him to fully develop. It was hard because with normal births parents are allowed to hold their babies, but with Ryan, we were not even allowed to touch him because it would have been a shock to his little heart.
By the time we were allowed to hold him, his torso was the length of a regular size snickers bar and the length of his arms from shoulder to fingertip was the “L” shape of my thumb and index finger. If you put your thumb and index finger in the capital “L” shape, his shoulder was at the end of my thumb and the tip of his fingers reached the end of my index finger.
By the time we were able to take Ryan home he weighed 5lbs. and he had to be dressed in Cabbage Patch clothes and Cabbage Patch diapers. The military hospital Ryan was born in had to special order his diapers because at the time of his birth they were not equipped for premature babies. After Ryan’s birth they made it a priority to have a Neonatal Intensive Care Unit for preemies.
Ryan never learned how to crawl. One day he went from laying on the floor and rolling to just getting up and walking. As Ryan grew, we had daily worship together and by the time he was two years old, Ryan had learned his ABC’s. You see the Bible that we used had capital letters at the beginning of each paragraph. He was pretty proud of himself as was I.
As he grew, I would try and play pretend with him and he would just look at me and think I was crazy. Ryan would say, “Mommy there’s nothing there,” you see Ryan was born an old soul. By the time he was four years old he was already reading.
I called the nearby elementary school to see if they were equipped for someone at Ryan’s level. I spoke to the kindergarten teacher and she advised me that it would be a mistake to put him in school because they were not going to be able to provide for his advanced needs. It was recommended that I homeschool him and that is what I did.
In 2001, I gave birth to Evan, his little brother, two days after Ryan’s sixth birthday. When Ryan came to the hospital with his dad to bring us home, he thought Evan was very cute and he was excited to see a baby until he realized that he was coming home with us. It took Ryan sometime to get used to the idea of having a baby brother, but once he did Ryan and Evan were inseparable.
Evan taught Ryan how to be a child and play as a child because Evan had a double portion. It took Ryan a minute but he finally caught on. Ryan and Evan were the best of friends and Ryan was very protective of his little brother. Everything Ryan did Evan had to do also.
When the boys and I moved to Las Vegas in 2004, I had to put Ryan in school for the first time ever and by the time Evan was old enough to go to school Ryan was right there making sure his brother was safe. It made Evan’s kindergarten teacher, Miss Galicia, crazy because she wanted Evan to learn to fend for himself.
I was able to get a job as the After School Care Director at the boy’s school as well as perform other duties like substituting for teachers that were out sick. One day I spoke to Arlyn Sundsted, the principal at the time, because I was feeling bad about not being able to buy the boys birthday gifts or holiday gifts. Arlyn said that the best gift I could ever give the boys was my time and memories. Those are the things that will matter and be remembered not material things because gifts given will be forgotten.
One day out of the week the boys and I would put our mattresses on the living room floor, turn on the fireplace, make a large Wal-Mart pizza, and watch movies until we fell asleep. I remember on several occasions, as the boys got older, apologizing for not being able to buy them gifts. Every time both boys would tell me, “Mom, you put a roof over our heads, clothes on our backs, and food on the table, what more do we need?”
When the boys did receive gifts or money from family back home, they would buy Game Stop Games because their dad and his family had bought the boys a gaming system. Because we did not have the money to buy new games the boys learned to take care of the games they had and were able to turn the games in to get new ones. We went to a specific Game Stop Store for years and an employee, whose name was also Ryan, watched them grow up and he was impressed with the fact that they were very respectful and they kept their games looking new for trade-ins.
By the time Ryan turned 11 years old, he complained about not feeling well. I started noticing something was wrong and I took him to doctors on base and they could not seem to figure out what was going on with him. It took time, but it was finally discovered that Ryan had Type 2 Ehler’s Danlos Syndrome or EDS which is a very rare connective tissue disorder. It was also discovered that Ryan was suffering from Petit Maul Seizures that caused him to go into a stare and be very confused afterwards. Later, he was also diagnosed with a form of Porphia as well as a form of Chiari Malformation of the brain.
As Ryan grew, his EDS became exceedingly worse to the point to where he could not get out of bed or he needed a cane to assist him in his walking. At one point they even had to surgically stitch Ryan’s abdominal muscles back together because they were coming apart due to his EDS. There were a lot of days when Ryan was physically like an 80-year-old. There were numerous times when Ryan was in so much pain that he had to call out from work. I just want to take this opportunity to thank the employees of Heaven Can Wait because any other employer would have fired him. They cared about Ryan and his well-being and we are eternally grateful for that.
Ryan had a big heart and a gentle and giving spirit. Animals flocked to him. He had three best friends that he grew up with here. I called them the Four Musketeers. Josh, Ian, and Aaron. Ryan would play online games with Josh on weekends and go to game night, the movies, as well as bowling and other activities with the boys. He had fun with them and it made him happy.
Ryan loved music, cars, motorcycles, astronomy, video games, jets, and he even wanted to get his pilot’s license. Some of his favorite youtubers were Red Letter Media, Super Mega, and OneyPlays.
June 4th, 2021, I had to take Ryan to the emergency room. They found on his EKG Brugada Syndrome. Brugada is a very rare terminal heart condition that is usually found starting at age 26. After his hospitalization he went to see a cardiologist and found, once again, on his EKG signs of Brugada. The condition needed to be verified through lab work but Ryan never made it that far. With Brugada Syndrome a person goes to sleep and the heart just stops beating.
Ryan and I had several conversations after about what he wanted in life since the discovery. The only thing he wanted was to be able to move out and live on his own and help people. The Saturday prior to his death he was at game night with his besties and he told me that he finally told Ian to be ready because once he was able to save up enough money, they were going to move out together. Unfortunately, that never happened. Ryan’s last night before his death, he was very happy. I believe his happiness was due to the fact that he would be moving out with one of his best friends and taking care of a kitten that he had found in our backyard that Evan, his brother, adopted.
Ryan made the choice a long time ago to donate his body to science because he wanted to help others who had the same rare conditions that he suffered from. I recently spoke to a friend that has a condition that breakthroughs have come about because of people like Ryan.
So even though Ryan was unable to move out on his own, he is still fulfilling his dream of helping people even in death. Ryan was a son, a brother, a grandson, a nephew, a cousin, and most of all a friend and he will be greatly missed.
In lieu of flowers, please donate to philanthropy.mayoclinic.org. Donate your gift to the Medical Research in Ryan's name, Ryan James Ammann, in the "In Memory of" portion.
An alternate donation site is Heaven Can Wait (heavencanwaitlv.org). Go to the donation page, and put in the amount, then put in his name, Ryan James Ammann, in the "In Memory of" portion.